DS - an issue of life?

In my last post, Is Down's Syndrome an Issue?, most of the comments I received were supportive of my position. I have found this is not unusual in blogging as we fear causing offence to those we like and are more likely to avoid commenting if we disagree with someone, especially on an emotive subject.

My blogging pal, SafeTinspector, did challenge what I said, however. When I wrote my reply I realised that not only was it much longer than the usual comment reply, but it contained what I felt were fundamental aspects about how I view the world and the issue of Down's Syndrome and pregnancy terminations. Therefore I have repeated his comment and put my reply into this new post instead of the comments.

*******************ORIGINAL COMMENT

"According to statistics I keep finding, upwards of 80% to 90% of pregnancies carrying children with Down's Syndrome are terminated."

Kim, I think this probably goes to wether or not you think abortion is murder to begin with, and ends with wether or not someone would voluntarily put themselves in a position to have a permanent dependant.

There may even be flavors of what reasons people have for making babies to begin with. Continuation of the species, contributing useful societal members to the next generation, carrying on the family name, whatever. Most of the traditional reasons for becoming a parent are not necessarily served by having a child with significant learning disabilities.

I can't blame a parent for not wanting to have to go through what you and other downs syndrome parents must go through.

And though you may judbge me for this statement, I must be honest with you: If I knew for a fact that Heather were to bear a child suffering from a major learning disability we would probably choose to terminate as well.

"The human race has an appalling track record of seeking to destroy that which it fears, and what it mostly fears is difference."

I can take this statement two ways. The first is that you are talking about people wanting to kill or hide people suffering from downs syndrome. I can't agree more that this is a societal wrong. Maltreatment of the learning disabled is abhorrent, should be abhorrent to everyone, and should never be tolerated. Neither should coddling, or putting the disabled up on pedastals as if the fact of disability automatically renders one a hero. (Taking care of someone with a disability, Kim, is an automatic hero card)

But the other way to take this statement is that if there were an in vetro cure for downs syndrome you would have chosen not to use it, and would encourage others not to use it. I don't think that's what you really meant though, so I suppose I'm just a bit of a mixer.

*******************MY REPLY

There are a lot of things in what you say, but firstly I’d like to say I appreciate your honesty. I know with blogging, when you disagree with someone, especially on an emotive subject, it’s easier not to comment for fear of offending.

On the issues of abortion as murder, this is a big question that could be debated at length. On balance, I do tend to think of it as the killing of life and feel that it is too easy to pretend the unborn child does not count. There are many reasons why a woman may choose to terminate a pregnancy, some of which are more justified than others, but I do not feel that I have the right to impose my will and say no, never. Therefore I remain pro-choice, even if I disagree with many of those choices.

But the bigger issue being dealt with here, is the notion of the right to life of those who are different or perceived to be disabled. The biggest problems are a) where do you draw the line and b) who’s making the decisions and why

Most people’s fears of DS are because they don’t experience it first hand, but are filled with the prejudices and half-truths that come from a society in ignorance. You have mentioned that you suffer from ADHD and will essentially be on the meds for life. So when you talk about people having to cope with those who have special needs, if there had been a womb-diagnosis of the condition at the time, how would it have been if your parents had decided to terminate.

To move it on a further generation, if your daughter is diagnosed with the same condition, would you think to yourself that you wish she’d never been born? I would think that highly unlikely. The fact is you know your daughter for who she is and all the wonderful things about her other than the ADHD (actual or potential).

Likewise, to parents of children with DS, the DS is such a small part of who they are. Would you love a child less because they were born with 4 fingers instead of 5 on one hand? Would you love them less because they were born hard of hearing, short-sighted, gay, had ginger hair or a tendency to vote Republican?

Compared to who the child is as a whole, the perceived disability is a minor thing. This is the case with Down’s Syndrome.

There is no hero card – that in itself is a patronising concept. Are any of us heroes because we want what’s best for our children?

Our society paints a picture of stupid mongs dribbling into their shirts - but it is a false image, an image painted out of fear and ignorance. To my mind it is a prejudice that is as ignorant and insidious as that of those who believe that non-Caucasians are sub-human.

To terminate a pregnancy because the child has DS is to terminate a pregnancy out of fear – fear of the unknown, fear of responsibility, fear of difference, fear of society – all of which, in my eyes, are unjustified.

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28 comments

Nice response Kim. SafeT just proves my point about the ignorance people have about the so called “disability” our children have. I find the comment “If I knew that Heather were to bear a child suffering from a major learning disability we would probably choose to terminate as well” interesting. SafeT would actually choose to terminate his child if he/she were to have a “major” learning disability (Sorry, I just needed to repeat that sentence out of disbelief). Even though my views of abortion are similar to yours Kim, I feel that SafeT could have made a better argument if he had mentioned an actual life threatening disease e to the mother and/or fetus. Even under those circumstances, I can’t necessarily agree to end the pregnancy.

I do not expect everyone to see the world the same way I see it, specially when we parents who have children with special needs start discussing the views we have re: our children. I think for most, the only way to see it from our perspective is to experience it on a daily basis first hand. Only then do I believe the ignorance can diminish.

I certainly respect others opinions however, once the above statement was made, I couldn’t justify arguing with someone that ill-informed.

Thank you for sharing SafeT. I'm glad that you commented on this topic. Sometimes we parents of special needs children need to hear the way the rest of world thinks.

SafeT - I think you deserve a hero card - it was very brave to be so honest and I admire that.

Just one point I would like to make and that in relation to your comments "significant learning disabilities" and "major learning disability" - this is exactly what people don't understand. Persons with Down Syndrome are necessarily severely or even moderately disabled. DS covers the learning disability range from "Mild" to "Severe" but it is automatically assumed that there is no difference in ability. Also there is a form of DS called "Mosaicism" and people with this form are very likely to have a close to normal IQ. Again we are back to ignorance and preconceptions ("they" are all the same) and it is through ignorance and fear that these pregnancies are terminated.

Down Syndrome does not define my daughter, it is a part of her. And I am NOT a hero but I love my daughter and hey, if she didn't have DS, she wouldn't be the child I love today. And when I went on to have another child I declined testing as while naturally I preferred to have a "typical" child who wouldn't have to face all the problems Sarah has to face, I wanted my baby and knew that DS was nothing to fear - again I am NOT a hero. And guess what I got a "typical" child but he has his own challenges as does everyone.

I think that's the point Kim was trying to make, yes DS creates challenges for the individual and their carers, but every child born is unique and every child has their own challenges and differences but they are not denied opportunities because of their differences, whereas a child with DS or any other obvious disability is.

"So when you talk about people having to cope with those who have special needs, if there had been a womb-diagnosis of the condition at the time, how would it have been if your parents had decided to terminate."

This is a red herring in that I wouldn't care if I hadn't been born, because then I would not exist to care. The fact that someone wants to stay alive regardless of their disability or that a parent wishes to care for their child regardless of their disability are results of the human existence but do not prejustify the existence. There were many instances in which I made love with my wife without conceiving; did those sperms and eggs all constitute unacceptable discarding of possible humans? If one of them resulted in a person, would it be fair to wait 34 years and then ask them if it would have been acceptable for their parents to have taken better precautions to prevent their conception?

"Likewise, to parents of children with DS, the DS is such a small part of who they are. Would you love a child less because they were born with 4 fingers instead of 5 on one hand? Would you love them less because they were born hard of hearing, short-sighted, gay, had ginger hair or a tendency to vote Republican?"Again, once a child is born they have an existence, potentially full of love and opportunity. As a parent you have a joyful duty to provide the love and try to ensure the opportunity. How much you come to love a child shouldn't enter into the debate surrounding the conception of the child. We all love the people we come to know through a million little accidents. The choices surrounding the conception are just one of the many millions of factors that went into making that person and bringing us together with them.

"To terminate a pregnancy because the child has DS is to terminate a pregnancy out of fear - fear of the unknown, fear of responsibility, fear of difference, fear of society - all of which, in my eyes, are unjustified."This is your opinion, of course. But when a parent decides to have a child they might be doing so for very different reasons than you or I. If they don't want to raise a person that will be primarily dependant upon them for the rest of their lives, and can prevent such a thing ahead of time, before love enters the equation and before the existence of that human becomes a fait accompli, then I don't think it is necessarily the reasons you outlined and I don't gainsay them their choice.I had a cousin with muscular dystrophy. He was a great guy, and I enjoyed his company. His family loved him, and he lived to the age of 26 before finally passing away. If his parents could have known that Nick was to have MD, they might not have had him. But, and this is philosophically key to my point of view, they did have him. A world without him only seems tragic because in this world we came to know and love him. But in a hypothetical world in which he had never existed, you can't use that as a point of comparison. This doesn't invalidate his worth or the love we felt for him, however. I still miss him at family gatherings.

"There is no hero card - that in itself is a patronising concept. Are any of us heroes because we want what's best for our children?"

Compared to those who would hide away their DS children, or institutionalize and pretend they don't exist, or act in ways that aren't in the best interest of their kids, you are a hero. A hero is the opposite of a villain, after all. And yes, I think you should get kudos for doing what you are supposed to do. I think society tends to sell short the sacrifices that we all make.

Oh, I did want to add that some parents who might choose to terminate a pregnancy of a DS baby might do so because they recognise their own limitations. Maybe they are insightful enough to know that its not something they could handle.

bstrong: "Thank you for sharing SafeT. I'm glad that you commented on this topic. Sometimes we parents of special needs children need to hear the way the rest of world thinks."

I think if you've read my bizarre wanderings you would find that I'm not much like the rest of the world, even if in this it may have seemed so. I'm probably a bit worse than the rest of the world, although less hypocritical. Of course, you could read my response to Kim for details on that stuff.Not everyone is strong enough or interested in having a special needs child. If my mother had chosen to terminate me because she knew I'd have ADHD, suffer from migraines and flat feet then I'd be OK with it. Then again, I wouldn't have that choice, would I? :)

stella:"And I am NOT a hero but I love my daughter and hey, if she didn't have DS, she wouldn't be the child I love today."

You are absolutely right. She is now the daughter you've always had. You can't imagine a world without her, I bet. I know I feel that way about my daughters, Samantha and Riley.I'll tell you that Sam's been diagnosed with ADHD. I have this same disability and had, in fact, diagnosed it long before the pediatric psychiatrist confirmed my conclusion.If there had been a test to tell me that she'd have ADHD, or migraines like myself, or schizophrenia or autism, then I might not have had her. From my vantage point five years in, this is an untenable, unthinkable, incredibly horrible idea. I can't bear to live without my daughters.I would happily die for them.

But there were many opportunities to make many other children. Do I mourn for the children I didn't have each time I had sex with my wife? Would I not love those hypothetical children just as much as I love my Sam and Riley? Sure would! And I would just as surely look at the possibility of a world without them with indignant horror. But....I never had those kids.If I'd chosen not to have Sam--a concept that seems preposterous to me now--the person I would have been would not miss her at all. Would not be less of a man. Perhaps would be no more or less happy than I.

Before having a child with DS, I never noticed people with so-called disabilities. It wasn’t as if I wasn’t aware of the world around me—it was more about the fact I just didn’t pay much attention to people. I didn’t sit around wondering what life would be like if I had a child whose life was limited in perspective merely on the basis of a so-called genetic anomaly. It wasn’t something I concerned myself with, it wasn’t going to happen to me.

I didn’t have prenatal testing with the youngest three children. I didn’t care to know what the odds were. It wasn’t important to me. I was going to have another healthy child each time—that was how it was going to be. I never gave a single thought to the potential of a genetic condition or other anomaly.

When I was pregnant with my youngest child, I had a midwife. She came to our home for care, it was very non-invasive, comfortable, and free of all that medical crap I didn’t want. I wasn’t going to have another so-called sterile birth in a dirty hospital. I was going to deliver in a private setting free of straps, monitors, catheters, and all that other stuff that goes along with a hospital birth.

I refused to have another birth like this.

When my youngest child was born, I knew instantly she had DS. There was never a question in my mind, I didn’t need a karotype to prove to me this was the case. I knew it.

My life was forever altered—my thoughts, feelings, and opinions of the world around me changed so dramatically. What used to seem important didn’t matter as much anymore.

The simple things in life were ever so much more important.

My daughter struggled her first year of life, in and out of the hospital for what accumulated to be almost twelve full weeks. She had respiratory issues, feeding issues, stomach issues, and other health problems. She had PT, OT, and Early Intervention. Her schedule was jam packed with medication and appointments that all felt rather cumbersome in the beginning.

Yet, I quickly became so attached to this beautiful child—just as I had with each child before her. Was the fact that she had an extra chromosome really so different?

The amount of care or assistance she needed was incomparable to the love I felt for her. Before long what felt, unusual and different became routine and typical.

I have never loved her any less than I have any of my other children. Why would I? She is just as much a part of my family as they are. In fact, outside of some speech issues her life as a two year old is fairly typical.

Does this predict her cognitive functioning or her future—no, but does it really matter? Will the quality of her life be any less if she isn’t some scholarly profession? Are there really that many genius children being born today?

Will she be compared to her peers—likely so, will the results of those comparisons define her as a human, as an individual, as a member of society? Does it really matter if she works in a grocery store stocking shelves or if she works in as a pharmacist? Will her intelligence base the quality of her life? NEVER!

Life as a parent comes with no guarantees—we don’t know what we are going to get even if we choose to screen prenatally. Children come without manuals. Health conditions, cancer, and other catastrophic terminal illnesses come without warning. We just don’t know what a child’s future holds.

Take that one step further…

We don’t know if a child will finish school, engage in crime, become promiscuous, or addicted to drugs. We don’t know if our child will have behavior problems, emotional problems, or psychiatric problems.

I am feeling pretty safe with a good number of above-mentioned negative concerns that I don’t believe I will ever have to worry about with my youngest child.

We can elect to agree with abortion, disagree, or remain on the fence undecided. The decision is up to the individual. Yet, to say that aborting a child merely on the speculation or diagnosis of Down syndrome is acceptable because it is seen as the “norm” doesn’t sit well with me. I mean if we all jumped on the bandwagon and began rooting out pregnancies with children who may not fit the “ideal” model where would it end?

Abortion is a difficult topic—eugenics even more so.

Before you know it, we could be excluding children on the potential they may have blonde hair and blue eyes versus brown hair and brown eyes—where would it end?

Safet: You are entitled to your opinions, to your beliefs, to your perspective. Maybe you feel that yours is a common world view—maybe it is. Yet, I can’t help but think of the thousands of people I have come in contact with who had children with DS, who elected not to screen, who elected not to abort—who chose LIFE!

Here in the states on estimate predicts that 1 and 700 children are born with DS. It doesn’t seem to me that those sort of statistics hold with what your claim is. I can’t truly imagine these figures to be accurate based on many polls that show the majority of parents don’t know their child has DS prior to birth. DS is often missed in these prenatal screenings and even in ultrasound. The only sure way to know is via amniocentesis, not many people I know with DS children had this testing done.

In fact, I would love to know your source of data—I enjoy a good challenge myself I may write the individual or group and question them to determine how slanted or biased their study was. You may even be surprised with the results.

In closing, I can tell you honestly, that if I were to have another child—of which I have no intention, I would hold my ground about my choices and even as the mother of a child with DS, I would take the risk and go without genetic testing. I believe that everything happens for a reason—so be it.

OK, there are several points to make here, so I hope you're patient enough to stick with me (whaddya mean you have lives to get on with - sit down and listen up!)

Firstly, thank you to eveyone for contributing to this debate. I appreciate the considered responses and I hope everyone has managed to get something out of it.

Jo - there's nowt wrong with ginger hair, only voting republican

Rebecca - the abortion rate statistic came from me, not SafeT and is found in several places here for example

Stella - we're in complete agreement

HappyKat - The number of traumas you go through as a parent anyway, having a few DS issues added on don't make much difference. Besides, some are evened out. Rebecca's comment that there's probably less chance of our child "engag[ing] in crime, become promiscuous, or addicted to drugs" I would guess is likely to hold true.

People rise to the occasion when given the opportunity. FEAR stops people from trying many things that they would actually be able to achieve.

(Glad you enjoy the blog)

BStrong - I don't know about producing mind blowing comments, but you have to remember that I'mon a different time zone to you. Your comment came in at 1.11am

SafeTinspector - In essence, your argument appears to be that of course you fall in love with and look after any child you have, regardless of any perceived disability. However, given the choice you wouldn't chose to burden yourself with a child who will be more dependant.

I don't think many people would deny someone choosing a perceived "better option" - we do it all the time: we look for the best fruit on the shelves, the best model of car we can afford - in general we choose the perfect over the defective.

However, there are 2 issues are primarily being addressed here.

One is the perception of what is defective. Every parent of a child with DS in these comments has challenged your perception of it as defective enough to refuse to take it.

If, for example, you were in the supermarket and you saw a fruit that looked a bit less shiney than another one and so were about to walk past it, but a person-in-the-know was to tell you to stop and opened the fruit, let you taste it, and let you into the secret that while the fruit looked different it was just as sweet as any of the others and even had some unexpected but subtley enjoyable flavours, then you would never look at the fruits in the same way again.

All the parents here feel that the reason you see DS as a defect is ignorance - they have experienced something unique and feel sad that you are still in a state where you feel that that having a child with DS is worse than having one who is not.

This also raises the issue of where you draw the line on what counts as an acceptable human. If we could pre-screen for bi-polar disorder, below average IQ, being gay, a tendency to obesity etc, would these constitute reason enough to abort?

The 2 issues then, are of when a foetus becomes a life worth supporting and whether DS is considered to be a defect worth discarding.

So this is not about saying, before the event, "shall we have a child with DS or not?" It is about saying "there is a child/foetus growing that has DS. If we let nature take it's course then that child will be born. We chose to terminate that life on the basis that it has DS"

This weeks Sunday Times magazine had a mother and daughter (I think its called "Relative Values") - the daughter was 20 with DS. The mother was searingly honest and one of her comments was "I love her, I really do, but I still mourn the child I didn't have"So sad.

Kim: I apologize for missing the fact the statistical data came from you. It was very late when I replied and the emotional impact Mr. Safet had on my evening left my mind in quite a quandary.

Not because I was shocked about his ideas or perceptions, more because it is just so sad that anyone would feel this way.

I will check out your link later this morning--once my mind adjusts to only having about five hours of sleep. The numbers just seem to high to me--but now realizing they were your figures leads me to believe they are likely more reputable than I previously thought.

You did an amazing job of echoing the perceptions of your DS paremts in these comments.

"So the grey area is at what point is it ok to abort? At what point does it move from being a collection of cells to a child worth giving the opportunity to live?"

You are right, of course. Ive approached this before. When is a human sacrosanct?The things you spoke of, blinking, yawning, moving fingers, I don't think those necessarily indicate humanity, though they certainly indicate living and mammalian life.Having had two newborns, and having talked with one pediatric neurologist, there's not much sentiency to be found in a child that young. Prematurity thrown in and there's even less there. Go back early enough and the fetus is almost indistinguishable from that of a chicken.

I have no doubt that DS children make great people. And being a parent to one can be rewarding and joyful. But I believe a parent can base their decision on wether or not to have children on this factor like any other. I wouldn't want to force someone to parent a chld they aren't suitable or willing to raise. That happens enough as it is, and the results are so oftern tragic for the children that it makes me itch.

'Course, in the US (and possibly UK, not sure) having children is considered a fundamental human right and the most degenerate habitual criminal with drug addiction is allowed to have kids. I don't know why I mention this, perhaps because I'm tired and it just floated to the surface. It just seems like the flip side of this issue for some reason.

P.S.:Neither of my children were screened for DS, so I might very well have had a DS child. (risk factors were low, and in the US screening is only automatic for older mothers, I think)

Safet: prenatal screening is an option in all pregnancies in the US. It is encouraged in all pregnancies in the US regardless of factors such as age.

As a soon to be grandmother, who sat in on my daughter's nine weeks appointment I can tell you that the push is to have testing--no matter what. When my daughter replied "no, it doesn't matter to me", the doctor pushed hard for her to do so anyway. She even brought my daughter to tears.

I was quite shocked to find they even request to test parents of certain backgrounds for a trait that would increase the risk of things like sickle cell anemia, and some other unusual conditions.

I would say that most women likely have this testing without ever thinking about the potential outcome--as the testing itself is reccommended in every parenting and pregnancy magazine you can find on the shelves, and most of the websites one might find.

It's just general practice, something you do when you are pregnant in the US. Not everyone chooses to do so, but declining is often a tough debate--most of the time the doctors win.

SafeTinspector - but by your definition, it seems to be ok to discard the child even as a newborn. A recognisably human personality rarely forms before kids are 9 to 12 months. Should we be able to get rid of them then?

I don't know where you are drawing your line or why.

Rebecca - This is one of the other aspects to this whole issue that is so insidious - that the medical establishment pushes for the terminations. Would-be parents are not given all the facts or unbiased information before being made to chose whether they keep their child or not.

BStrong - I was too busy trying to combat global warming, alleviate world poverty and find a cure for at least 12 of the world's incurable diseases.

rebecca:No one pushed for any sort of screening with either of my children other than an ultrasound test at the appropriate times. We knew the sex, limb count, and size of our daughters' cogent points and no more. Perhaps this differs from doctor to doctor?

Kim:I can't imagine convincing anyone of my being right or wrong on this, as base ideas of right and wrong which are fairly subjective are used to form these kinds of opinions. But then, I don't have as clear an idea of right or wrong as you evidently do. It is a personality flaw I will likely wrestle with as long as I am alert and capable of thought.

I think the point of disagreement between us is not so much about wether or not DS is a trait to be sought after or avoided, but is fundamentally about what constitutes the sanctity of human life.

I regard our race as far less innately valuable than you, I think. And in that we probably will never agree.

I regret having voiced my opinions in these matters, as I know them to be abhorrent to most people on all sides of the arguments. I'll retire from this conversation now.

safetinspector/Kim: I've followed this debate with interest, and, though I've had little to contribute to it that was not said already (from either side), I wanted to write that safetinspector, I don't think you should regret posting your opinions at all. It is always enlightening and worthwhile to hear a differing point of view, even if you don't agree with it. Personally, I feel that both sides have valid opinions, and my wife and I have had similar ethical debates in the past. It's a frightening and complex situation, and there is, in my opinion, no definitive right or wrong answer, save what is right and wrong for the person affected.

Therefore I think you should be able to hold your head high and be proud for having the courage to challenge Kim when the majority view was in opposition to yours. Kim, likewise, it's good to see that you're willing to engage with someone's views, even if you don't agree with them. It's refreshing when you see so many situations where an argument descends into expletives to see something like this. Good on you both.

My problem with aborting a child just because the child has Down Syndrome is this. What if you have a 'normal' child that is 'typical' in every way. In your peer group your child is the first to get off the bottle, the first to be potty-trained, the first to speak... And that same child is injured in a car-wreck in 4th grade rendering them 'severely mentally disabled.' Or you have a normal child in utero that is diagnosed with autism in kindergarten...a perfect pregnancy and absence of Down Syndrome isn't a free ride into parental bliss. There just happens to be a prenatal test for DS, but not for other forms of mental disabilities. And there are PLENTY. (As well as physical disabilities.)

Allowing someone to enter your uterus to stop a beating heart because it isn't your idea of perfect is insane to me.

Anonymous - Thank you for your contribution. I would ask that if you comment again that you adopt a name so that I will be able to identify you from other anonymous comments.

I would agree with the point you make, but the point that SafeTinspector is making, is that while you would deal with a child that has an accident or develops a condition you weren't aware of, would you choose to have the child in advance, if you knew it would happen?

To my mind, that is not the rightquestion though, because at the point you make the decision to abort or not, the child is already in existence - it's not like making a conscious choice before you begin.